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Month: January 2013

A few years back I was riding with a friend and fooling with the cd changer in the car. Rage Against the Machine came roaring out of the speakers, practically ejecting me from the car. “That’s my fixit playlist,” he laughed, “for when I need to reset my brain.” His list included Radiohead, The Clash, all music that would get adrenaline flowing in just the right way for him. I thought it was a brilliant idea and started compiling my own Fixit playlist. Being me, I came up with several lists and for years now have been burning Fixit cds with dates on them to make sure I knew when I had finally hit on the real deal. The criteria were that it had to improve my mood under any circumstances and when played the second or third time I did not start skipping songs to get to one that worked – they ALL had to work so could leave it in the car player for days (weeks) and at time and know I had access to the necessary music. I drive almost every day for long distances and do much of my best thinking in the car, so the music component is key. Someone in our ASD support group once noted, “I do all of my best crying in the car.” It’s true – the car is where we pull it together, and we need the right music to get us to the our next destination (school, doctor, therapist, IEP meeting, liquor store, etc.) in the right frame of mind. A few weeks ago I realized that I was always reaching for the April 2012 disc, so here’s what’s on it (with a few add-ins because even that one is missing some key songs).

This is my list. It’s not about taste, era, nostalgia, or identity. It just works. What’s yours look like?

I started to put in links for the individual songs but it was clear that many of them would not lead to the actual music, so I put in links to the artists instead (and, as an aside, some of these official websites are really creative, really cool or really hilarious).

It’s the end of one crazy week and the start of another. We’ve had almost every kind of moment – panic attacks, unrequited love, dancing for joy, teenage rebellion, violations of personal space, bursts of creativity, and early morning hugs before school that reset our relationship from whatever happened the day before. And today an exchange – scripted, yes, but genuine all the same – that is both typical and necessary following transgressions large and small:

Me: “You need to stop ______, please.”

Him (hands on hips, smirk on lips): “What are you going to do with me?!”

Actors at a dress rehearsal for “Annie” by the Open Door Theatre. The community theater company includes people with special needs.

When the blue curtain opens at Open Door Theater’s Jan. 19 performance of “Annie,” the show will begin, a little differently.

The house lights will stay on, dimmed. Audience members will have stress balls to squeeze during the performance. They will be free to get up and move around during the show. And if the musical feels too overwhelming, they can escape to a quiet “chill-out” room down the hall.

This matinee is the Acton-based theater’s first autism-friendly performance, modeled after similar shows on Broadway. Actors and other involved in the play received special training developed for them by the Autism Alliance of MetroWest.

“Bright lights and loud sounds and smells, for folks that have a lot of sensory issues, can be distracting and…

I don’t know why it is that we get so tired of some things while others endure. The excitement of chases has been there since the first game of tag in the toddler days. It is a cumulative process; we watch, do and draw the same things over and over year after year, just adding details and getting better. A few years back there was an Open Season for Rabbits and Ducks sign nailed to a tree in our back yard. I love that he added the latin name for Wile E. Coyote – he really empathizes with him even as he delights in the Road Runner’s narrow escapes. “That poor coyote, he keeps getting killed, and that road runner is just far too fast.” There’s a metaphor in there somewhere.

I think it is me who is regressing this January. We did a lot, learned a lot, and worried a lot in 2012. I am wiser but much less brave than I was a year ago, having gone from sending our boy away to camp for a whole summer to being reluctant to send him to school for even a day. Sickness and Sandy Hook (not to mention a totally dysfunctional Federal government) make me think we are more vulnerable than ever and while we have a plan (as of yesterday) to get him healthier I haven’t the slightest clue how to rebuild our confidence. We were always wary of the outside world; now the outside world is wary of us. When we ventured out over the holiday season I noticed that I stopped using the word “autistic” to explain odd behaviors – in fact I avoided saying anything at all to anyone about him, and made more of an effort to avoid eye contact. I am ashamed that I want to be invisible, angry that people are spreading ignorance and fear about autism and appalled that I have allowed it to affect my behavior. Still, we go out a lot and, like many parents these days, we do our best to show and tell our children how much we love them. And, quite literally, we hang onto them a little tighter than we used to.